Pcr question

Yep you’re doing fine. These milestones do cause undue stress. You practically there for month 3. Very few hit everyone bang on. As others have said over and over the trend is down and that’s the main thing!

All the best

Alex

Be very watchful for Neutropenia on 100 mg. Sprycel at that dose can cause severe myelosuppression as well as other adverse events (pleural effusion). I would never start a patient at 100 mg - there is too much data suggesting 50 mg is a better starting dose. You can always increase if threshold is not met. Some patients do require more dose, but they are few. The vast majority would do well on 50 mg starting dose or LOWER.

I take 20 mg sprycel and I am "undetected". I never took 100. The most I ever took was 70 mg and only for a week before my blood counts cratered. I was re-started at 20 mg and achieved PCR < 0.01% in a month and then "undetected" shortly after. Of course I did other things as well (vitamin D, selenium, curcumin) which probably helped my PCR fall. Sprycel is POTENT when it works. More is not better - more is more toxic. Your goal is to take less and less drug until you no longer need it! That's all of our goal!

Show the papers below to your doctor. If he is unaware of them, he is not up to date:

https://www.ncbi.nlm.nih.gov/pubmed/29723397

https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.7052

Note publication dates of these papers - most recent is May of this year. Most practicing doctors are unaware of the new standards emerging.

Sprycel is a "threshold" * drug in that when it works it works very well once a minimum dose is crossed. You do not need more drug to get a deeper response - in fact more drug is likely to cause less of response because Sprycel also suppresses you natural immune system. The key is to find a sweet spot dose that works best for you. Odds are it is not 100 mg. I know this is counter to intuition - i.e. take more get more benefit. But this is simply not true.

(*This is in contrast to gleevec which is not a threshold drug. Gleevec works better the more you take - up to its toxicity level.)

(** keep in mind that drug dosing is determined in clinical trials based on toxicity and response. They seek to maximize both measures. Only now are they discovering that lower dose can give as high or higher levels of response. This new information will eventually make it to the label)

Have you met with Dr Mauro yet?   Wondering how it went and what his opinion was.    My wife is also now seeing Dr Mauro (her first appointment was also in Feb).